Tuesday, July 31, 2012

The Glenn

I think I have a silent clock ticking in the back of my mind. We are almost counting down hours instead of days until surgery on Thursday. Thursday will go down as probably the hardest day of our lives so far. For the most part, I've put all thoughts and ideas about this day out of my head and am focusing on each hour and each moment instead. God has given us the ability to do this, and the strength to enjoy Blaise instead.

This morning about 7 before heading to work, in the midst of my cafeteria chocolate frosted donut, Dr. Hammel popped in to talk with me the surgery. I'll always appreciate his honesty, and how he took the moment to sit down on the couch next to me and talk to me one on one. He explained how the group of cardiologists came to the decision to do the Glenn instead of doing a transplant. In the end, both had their pros and cons, and honestly one probably doesn't outweigh the other by too much. The risk with transplant is rejection, harm of other organs, etc.  The risk with the Glenn and Blaise's coronary arteries is that the doctors have seen patients just like him that with no rhyme or reason or warning pass away. Hmm. Always something we've known. We shake it off and re-focus on today instead.  I mean, I might be prejudice, but with a kid this stinkin' cute- how can you not?!

video
We are doing good in "hospital world". Blaise has nurses wrapped around his finger. There is honestly a fight over who gets him each day.  Jessica remains at the top of his list. I worked all weekend trying to get him to laugh for me. Jessica walked in the room last night, said "Hi Blaise" and he took off giggling for about five minutes. I even got it on video. What a stinker.  The Olympics have also become a main-atraction for television watching. Speaking of which- Blaise is a tv addict. That kid can find the television in the room no matter what direction you hold him. He'll crank his head around and stare at the tv, totally mezmorized. In other random hospital news, the big dork that I am, actually got to meet Kristen, sock-monkey Charlie's mom yesterday! She was in the hospital visiting and I stumbled out of our room to admit how dorky I really am.


We've been told Blaise will be the second surgery of the day on Thursday. From my deductions that means somewhere between 11 am- 2 pm.  Based on my knowledge, it will probably last about 4 hours. He will be put on a form of bypass during this. They will use the same incision line as before, and will again be cutting through his ribs. As Dr. Hammel explained, he can't go on full bypass because the blood flow and pressures to the coronary arteries need to stay the same.

So, on to more important educational things. Your anatomy lesson for the day.  An explanation of the  Bi-Directional Glenn, 2nd stage in the repair for his heart. He is down the single ventricle path called the Fontan Procedure. Basically, at the end of the surgeries, he will function with only half of his heart, hence "single ventricle." We're very fortunate to have this option and there are many kids and some adults who live today with the Fontan.

According to statistics, our risks have been cut significantly since making it to the Glenn. 25% of babies don't survive to the Glenn and now that number has been cut in half, post surgery and recovery after the Glenn. A big relief yet still scary at the same time. Here's the info. about the Glenn surgery. Really it's just replacing what he already has and cuts down the work load of her heart since it's not having to pump blood to the lungs now. His O2 saturations (sats) should hang in the low 80's (healthy hearts are 99-100%) . Babies typically really take off after having their Glenn since they don't feel so tired. They start eating better, growing and hitting those developmental milestones. What wonderful news to hear. Improved eating...amen!

The aim of this operation is:
• To maintain the flow of deoxygenated (blue) blood to the lungs by attaching the superior vena cava directly onto the pulmonary artery. This is called a cavo pulmonary shunt.
• The Gore-Tex shunt that was inserted in the operation for stage one will be removed.
This operation is necessary as the baby's heart will have grown but the Gore-Tex shunt will have remained the same size. The shunt will therefore no longer provide the baby with oxygen it needs. Since the cavo- pulmonary shunt is made from the baby's own tissue, it will grow with the rest of the heart. It is passive blood flow to the lungs, not pumped since the right side of the heart cannot function in this manner.
The final operation is called the 'Fontan Operation', which is often done at between two and four years of age.

We've had lots of people offering to help in one way or another. The biggest help we can get is prayers. Our God is amazing and one that creates miracles. We pray for a successful surgery, a easy stress-free recovery, and peace of mind. God knows his plan- we are excited to see it unfold.
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Thursday, July 26, 2012

All connected

Last night as I was rocking Blaise, and trying hard to keep him upright during one of his ng tube feeds, (ugh, long day with 4 vomiting episodes) I started talking with one of our favorite nurses named Natalie. I'll often compare notes and share stories of the many families we've met during this incredible journey. It's amazing that once complete strangers, I now feel like I have great friends that know exactly what we are going through. Of course, Kelli & Dillon seem like life-long friends now. I wasn't sure I could text someone 20 times a day like we do, but I couldn't image this journey without having someone else there to ask for help, vent, and share stresses with. Great friends like the Vorderstrasse's whose little boy Alex is having the same three step surgery process and is almost exactly a year older than Blaise. His mom has answered just about every crazy question I've come up with. They even  made a special trip to Omaha since we've been admitted this last time.

I was sharing with Natalie how after I had learned of Blaise's heart defects, instantly started googling as much as I could. I came across several other heart mom's blogs, and became enthralled, reading up as much as I could. Knowing their experiences, journey and success stories or angels makes it all easier. I randomly found a little girl named Charlie, whose mom does an incredible job writing her blog. She has similar defects as Blaise and was treated at Children's Omaha. Charlie passed away last May at 1 year old and her mom started making sock monkeys in her memory. She had donated a bunch to Children's in her memory. Last Wednesday, Children's hosted Christmas in July, and Mike and I took Blaise down to meet Santa. There were hundreds of toys everywhere, and all of a sudden I looked at the Christmas tree and saw some of Charlie's sock monkeys hanging on it. I knew this was the perfect gift for Blaise and of course asked if we could have one. I've never in fact met Charlie or her mom, but Natalie and I compared stories about her for quite a while last night. A few people have made comments saying they aren't sure how they would ever handle going through a situation similar to Blaise's. I always respond, we aren't doing anything any other parent wouldn't do in our situation. Trust me, there are times that are way more difficult than others, but God chose us, and that feels pretty awesome to me. A fellow heart mom shared this statement and I completely agree: It's always said God wouldn't give you anything you can't handle. I agree, but I also think that God gives us things that are harder to handle, in order for us to turn to Him and form a greater relationship.

Speaking of nurses, I have to give special thanks to the amazing women (and man) that get to take care of Blaise in the hospital. Incredible people who care for him as much as we do. He has a few ladies that have made an impact on him. His girlfriend is Jessica- he lights up when she comes in the room. She actually got him to giggle for the first time. Luckily mom and dad got to hear it, even if we weren't the ones making him giggle. Blaise is well-known throughout the hospital. I guess when you spend multiple weeks there, it will happen.

Now we just wait as the clock clicks down until his next surgery. This one is a bit more complicated process than his first. They will be completely shutting down his heart and putting him on bypass, which they did not do last time. I'll put up a post explaining the procedures they will be doing.













Also had some requests for videos and photos. Enjoy our sweet, cuddly, smiley, happy, adorable, gift from God baby boy!

Wednesday, July 25, 2012

Scheduled- Thurs. Aug 2

We've just found out that surgery has been scheduled for Blaise next Thursday, August 2nd. He is the second surgery that day. It will mark exactly three weeks since being admitted to the hospital. Our prayers are going up already for healing hands that day!

Blaise is doing good hanging out at the hospital. He has had a bit of a case of spitting up/vomiting the last 24 hours. Last night was bad enough after his 9 p.m. feeding that his feeding tube actually came out of his nose. He did not enjoy getting a new one. He also vomited again this morning after his 9 a.m. feeding. He is so scared/upset/screams when this happens. Makes mommy feel bad for him!

Mike is gonna stay in Oakland for the next week to keep working until surgery. I will stay at the Rainbow House at night, swing by the hospital in the mornings then head to work, visit him over my lunch break, and head back at night.

I'm hoping to run to Oakland this weekend to re-group and re-pack. I left on July 12th just headed to work, and haven't been home since. Mike did a good job packing for me, but with our extended stay I'm in need of more things. Especially a few things for Jenna's wedding on August 11th. Extra prayers that Blaise's recovery goes smoothly enough that our family will be able to fully enjoy the wedding and celebrate Jenna and Mitch's big day! He will have about a week to recover before I'll need to be doing my "Maid of Honor" duties!

Also, I think I FINALLY figured out the comments on this thing. Many people have said they haven't been able to comment, but I "cross my fingers' think I changed a setting to allow anyone too. :) Just make sure and click on the drop down arrow when making a comment and choose name and fill out your name or choose anonymous.

Monday, July 23, 2012

Surgery next week

It was decided at today's heart conference to go ahead with the next surgery . They haven't told us a day but sometime next week. We thought Dr. Hammel was coming up to let us know but never heard anything. They will be keeping us in the hospital until then. Mike went back to Oakland tonight to work all week. Blaise finally had a scope done by ears nose throat dr. Who diagnosed with something I can't pronounce but basically means the various parts of the throat don't function quite right. He said they cN do surgery to fix or wait til he grows out of it.

Sunday, July 22, 2012

Tomorrow's The Day

Well, tomorrow (Monday) is the day the doctors all meet to formally decide what to do with Blaise. We are ready to find out what they have to say and move forward. Waiting around the hospital gets pretty old, pretty quickly.

Blaise has done better eating, we are moving in the right direction with this. He is off all monitors again, so he joined us down in the cafeteria today for lunch, and went on a few stroller rides.

It's been a LONG time with no picture updates, so this one might be a bit overloaded with some. ENJOY!
 Erin setting up in our living room for Blaise's photo session

 Chatting with dad.
 Blaise was screaming, but our attempt of a family photo when dad took mom out to eat for her birthday.
 Celebrating the big 30th birthday!
 Uncle Adam introducing Blaise to the horses.

 Grandpa Craig with the horses.
 Hanging with Aunt Jenna.
 Looking at the card I gave mom for her birthday!
 Family photo the night before the heart cath.
 Doing what I do best, flirt and charm the socks of my nurses!!
 Lazy Sunday at the hospital with the Sudmann girls.
 Yep, mom and Aunt Jenna pretty much eat me up.
 Just the three of us.
 I know I'm good looking :)
Hey Nurses! Would you like some of my cookies that my good friend Annie made me?!

Saturday, July 21, 2012

Blaise is back!

Blaise spent Thursday night after the heart cath still totally out of it. He came back to the room off of the ventilator and did pretty good for most of the night. About 9 pm he sat levels started to go down, so they gave him some oxygen.  He came off it by about 4 in the morning. We really didn't even try to bottle feed him because he was so out of it. He felt pretty crummy all day Friday. He slept all day, and wanted nothing to do with laying in his bed. He was only happy if he was being held. Good thing daddy was his favorite person, and he seemed to calm down every time held him. They spent most of the day cuddling. He developed a bad cold/conjestion possibly from the breathing tube, and fought that and coughing/choking. His saturation levels dropped again last night about 9, so they put him back on oxygen, and he was again off that during the night.

Today, he seems to be back to his old self, talking-flirting-cooing. He did drink 55 cc's by bottle at 9 this morning. He also got a bath.

We are now just waiting until Monday when the heart doctors all talk. We are still hearing that most recommend the second round of surgery and not a transplant.  Both come with huge risks, so we are just not thinking about those since we've known them since day one, and instead enjoying God's little blessing!

Dad's gonna be the man in charge tonight, since Mom is headed to Aunt Jenna's bachelorette party! What a great group of friends Aunt Jenna has, that all agreed last minute to move the party from Des Moines to Omaha so that Erin could make it.

We cant say it enough- but the generosity and caring gestures, prayers and thoughts of so many of you make us amazed. Blaise has touched so many, and taught us so much!!

Thursday, July 19, 2012

Awesome God!

Our God is an awesome God! Dr Delaney just came to give his report. His recommendation is to go forward with surgery number two and not a transplant at this point. He will present his findings on Monday morning at the heart conference and all cardiologists will make the final decision. Listening to him describe how complex his heart is totally amazing. The one line that stuck with me is when he said "but it works for him". Just proves God knows what He is doing. Blaise is indeed young and little for the next round, but delaney said his heart pressures are perfect to proceed. We will learn more Monday. I'm guessing second surgery may be next week. For right now we will rejoice in the news we've received and know it's because of every single one of you that prayed. We have no idea how we will ever repay or thank each if you.

Heart cath updates

We handed our baby off about 12:15. Third time we've had to do this in three months. By far the hardest thing we have to do. He was swaddled up very peacefully asleep with his pacifier in his mouth. They are supposed to call after about 45 minutes with an update. Dear Lord please watch over Blaise and his Doctors and bring us reports of good news. Just got update call. Blaise is stable. They went through his left thigh. Will begin collecting data of his heart now. 2:45 pm: no update still waiting 3:00 pm: just got called. Blaise is stable they are done doing the research. His heparin blood thinner level is still high so they are keeping him under with the cath in watching and waiting for it to cone down. They mentioned this could be a possibility.

Wednesday, July 18, 2012

Twas the day before heart cath

     Today was another uneventful day, the only excitement was that it was Christmas in July here at Children's.  Blaise was able to meet Santa Claus, I'm sure he won't remember since he was sound asleep the whole time. He has been pulled off of his lovenox shots for a day or so to help thicken his blood up for the heart cath procedure. He will also be pulled off his formula at the 3a.m. feeding and will only be allowed clear liquids up until 10 a.m.
     Blaise continues to feel the need to flirt and coo away at every nurse that walks into his room. I don't know where he got that from.  We continue to thank everyone that has sent prayers and hope that they keep them coming in the next couple of days.

Tuesday, July 17, 2012

Tuesday

Blaise spent the day with the grandmas as mom and dad tried to wrap up as much at work as they could. It was a very uneventful day with the highlights being Blaise getting a bath and Mohawk from nurse Whitney and getting a feeding tube put in. This was done because the doctors want him to not loose any mire weight and be big as possible for Thursday's surgery. He has struggled off and on with feeding. Mike and I are overwhelmed with the support we've received. Blaise and God make every step of this process well worth it. We thank each of you from the bottom of our hearts and know God hears each of our continual prayers.

Monday, July 16, 2012

Surgery scheduled

Well we've learned some of the plans. After the heart conference this morning they gave us the news that they have decided to do a heart cath surgery on Thursday at noon. This is a surgery where they go through t groin with a small camera in an artery to get a close look at the heart. They felt with how complex Blaise's heart is this is necessary. The coronary arteries are what will determine the future. If they look okay he will be a candidate for the second round of his surgeries. This is early andvhevis very young still but think he is okay weight wise. If the arteries look bad then he will be put on the heart transplant list. Dr Hammel is out of town until Friday night so if they decide to do the surgery we aren't sure yet when that will be. It could be as soon as Saturday. We are all doing okay as we realize this is all beyond our control and in Gods hands. Mike will be staying home this week and not go to Montana. We pray for Blaise's cath to go very well and him to sail through with flying colors. We pray to get the news that we can proceed with the next surgery and not the transplant route. The closest hospital for this to be done is st. Louis. We pray for our continued strength and understanding. We pray that the next few days are ones filled with great moments and experiences. Blaise has melted the hearts of every single nurse. He is absolutely the sweetest babybin the world constantly cooing talking and smiling. He is so happy!! Thanks to our prayer warriors you lift us up and I know God is hearing all we say. Prayers for our hood buddy Landon too!

Sunday, July 15, 2012

Let God

Nothing new to report really. Blaise will be the main topic at the heart conference tomorrow and we will know lots more after that. Today Michael and I talked about how we shouldnt stress over anything. Of course much easier said than done. However, stress gets us absolutely nowhere. There is nothing we can do to change any part of the situation except send our prayers to God, and that is what we do and find much solace with. We know he listens to every prayer said by all of us. We are ready for some plans to be unveiled to us tomorrow and learn what steps happen next with Blaise. Of course our minds wander in every direction from getting discharged tomorrow to next surgery by the end of the week. We let God be in control as he always is and Michael and I spend our time doing our favorite thing- snuggling, cuddling, talking to and playing with our sweet baby boy. Michael headed back to Oakland tonight and goes to Burwell in the morning and Montana the rest of the week. I know it was hard for him to leave tonight. Thanks for the prayers!

Saturday, July 14, 2012

Chillin at childrens

Saturday is almost over. The feedingvteam came in this morning to help with his 9 am feeding. We are still adding rice cereal to his bottles to thicken them in hopes that will help. He screamed lots before his 9 noon and 6 feeding. The 24 hour holter heart monitor results have been read and from what we've been told by the floor residents is that they looked okay minus one time when heart pumped too fast. Still no word on the echo. Our nurse tonight told us Blaise is scheduled to be discussed Monday morning during cath conference which is when all if the heart cardiologists surgeons etc meet. We aren't sure exactlly what they will be discussing but his coronary arteries seem to be a topic brought up lots. At this point no discussions of gi dr or ent dr have occurred. Dr hammel the surgeon peeked in this morning to say hi. Ironic enough, it was exactly three months ago at the exact same time that he was performing surgery on Blaise's heart. We also met a family of a single ventricle baby that was born 8 days ago. Although not much further ahead of them in this process we hope we can provide them some assistance. Add baby raygn to your prayer list. Mike and I were talking tonight about how much fun it is to be Blaise's parents. We thank God everyday for this incredible baby. We feel great encouragement from all your prayers!! We know God hears every single one!

Friday, July 13, 2012

No answers today

Well today was a bit frustrating. We haven't figured anything out yet. Blaise had an echo this morning and we haven't heard results. He also had his 24 hour heart monitor pulled this afternoon and don't know the results. The feeding team came in this morning to watch him eat and thought maybe he was aspirating when drinking causing him not to want to drink. They ordered a swallow study where they have basically an xray that watches where milk goes when he swallows. Of course he acted great this round and all looked fine. They decided to have us thicken his bottle with rice cereal though to see if that would help. So far, all that's happened is the nipple gets clogged so he can suck with nothing coming out. In the end we've almost gone backward. After some frustrations of not knowing exactly what was happening it became evident as the day went on that Blaise will probably be here for a bit. After cardiology finally determines that it's not heart related they will probably ask for gibto look over him. Well nothing happens on the weekends, so that won't happen til Monday. Then I assume they will run tests making another possible day in. We are praying for the doctors to determine what might be causing the problem and whatever it is to be not serious and an easy fix. We also pray Blaise feels better soon.

Thursday, July 12, 2012

Checked in

Blaise has settled into his room. He was seen by dr. Kuglar the cardiologist on call. He has had an EKG done and a chest xray. They've done a urine cath to check for infection. They have him wearing a holter monitor to watch his heart for 24 hours. No great improvent on his eating but he is the star of the floor as all the nurses have stopped in to see how big hes gotten and flirt.

Prayer Request

Please add Blaise to your prayer list today. After a week of lack-luster performance eating, the heart doctors would like to observe him for a few days. We are checking back into 5th Floor Children's Hospital later today. They will be performing an ECHO to look at his heart. Initially they indicated to us that struggles with eating can be a sign of heart problems/ need to do the next step of surgery. We are praying this is not the case, and that it is more gastroenterologist.

Please send prayers Blaise's way. Today marks his three month old birthday. What a fabulous three months it has been!

We pray that God's hands are upon Blaise in the coming days. As always, we look to Him for guidance, and are reassured by the good He does.

Wednesday, July 11, 2012

Diet crasher

Right now is the highlight of my day! I'm lying in bed listening to my sweet baby talk to himself in his crib on the monitor. There is no better sound in the world! Since this is typed on a phone excuse grammar errors. It has been a fairly long week. Blaise decided last Friday that he didn't like eating anymore for some reason. He started doing really small amounts on his bottles and screamed as soon as bottle hit his mouth and had no interest. We've made some adjustments including doing half formula bottles. We really haven't seen an improvement. Tonight we ask for some extra prayers for improved eating for Blaise and as always a healthy heart. I've got lots of stories to catch up on so be checking back soon! Oh and the cardiologist apt went good! We head back in a month to start talking second surgery.

Monday, July 9, 2012

Quick Update

I haven't had as much time to update as I'd like. Being back to work makes it a bit harder, but wanted to put up a quick post.

Blaise has a cardiology appointment Tuesday morning where he will have his blood drawn and an ECHO done on his heart. We ask for prayers that this goes very well and his heart looks good.

Blaise has also been struggling with eating recently. Please send additional prayers that the new doctor's appointments will provide some answers and we can find the right diet that agrees with him. He had a very long weekend of fighting eating.

"He never said it would be easy, but He said he would be there to see you through!"